Las Vegas man with 100-pound scrotum seeks money for surgery

It sat in front of him, on top of a pillow that rested on a milk crate. He sprinkled baby powder on it — what looked like a huge watermelon encased in a compression bandage — but the unmistakable smell of urine couldn’t be completely smothered.

By Paul HarasimLAS VEGAS REVIEW-JOURNAL

October 16, 2011 - 8:27 pm

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It sat in front of him, on top of a pillow that rested on a milk crate.

He sprinkled baby powder on it — what looked like a huge watermelon encased in a compression bandage — but the unmistakable smell of urine couldn’t be completely smothered.

What sat in front of where Warren was seated in shorts — what is actually attached to him — was more than 100 pounds of scrotum, the protective sac of skin and muscle that contains his testicles.

"It’s not easy to get around," he said, standing and groaning as he lifted his scrotum off its makeshift pedestal and carefully let it hang almost to the floor. "It makes me stay in most of the time."

If there is a more unusual medical condition afflicting someone from Southern Nevada, the medical community or patient hasn’t come forward with it. Warren has gone public, even though he knows there will be those who laugh at him, because he desperately wants a costly surgery to correct the scrotal elephantiasis that became part of his life nearly three years ago.

Daily bouts of depression — "I want to have real friends and a relationship with a woman" — throw him into the depths of despair. "But I’m not suicidal. I’m too strong for that."

Much like Victorian England’s Joseph Merrick, whose life with severe deformities became the subject of both the play and movie, "The Elephant Man," Warren has concluded that to escape his present life he must allow himself to be exhibited.

Unlike Merrick, who used freak show exhibitions to stay alive, Warren at least has enough money through social programs to put food in his stomach and a roof over his head.

In hopes of getting the money for a possible corrective procedure that physicians have told him can cost about $1 million, Warren swallowed his pride by outing himself recently on shock jock Howard Stern’s national satellite radio and cable TV freak segment.

But he used the pseudonym "Johnathan from Las Vegas" to let people know that his penis is so buried in his scrotal tissue that he can’t direct his urination and often sprays the area around him.

He also told — to more laughter on the set — of how he can’t sit down for a bowel movement and must catch it in the same kind of pail used in casinos for coins.

"I don’t like being a freak, who would?" Warren said. "But I figured that the Stern show is listened to by millions of people and they might want to help me. I hope some millionaire or billionaire will want to help me."

Many people have reached him through his benefitballsack@yahoo.com email address, he said.

How much financial help he’s received, Warren won’t say.

"What I’ve got is a start," he said, his eyes tearing up.

If Warren lived in the tropical sectors of Africa, Asia, Central and South America, this case of disabling elephantiasis, or gross enlargement of his genitals to elephantoid size, would probably end up being attributed to a mosquito-spread parasitic infection. Known as lymphatic filariasis, the infection sees long, threadlike worms block part of the body’s lymphatic system, causing fluids to collect in the tissues, which can lead to a great swelling called lymphedema.

"In Africa and Asia, it is not so unusual as in the United States, and those who have it see it as a curse from God," said Dr. Mulugeta Kassahun, a Las Vegas urologist who grew up in Ethiopia. Those with the disabling condition in Africa, Kassahun said, often must use it to beg for food.

But Warren lives near downtown Las Vegas on Maryland Parkway and says he has never traveled to tropical areas outside of the country. And doctors who have examined him have found no trace of the infectious disease that produces the massive elephantiasis of the scrotum that ancient Indian and Persian writings first described centuries ago.

What Warren attributes his condition to is an accidental striking of his testicles by his own leg as he twisted and turned upon awakening from a sleep in late 2008.

"I never felt such pain," he said. "It was like a shooting pain through my entire body. When it stopped, it was like a huge tractor trailer went off the top of me. I think it ruined my lymph nodes down there."

The pain quickly went away but he said the next morning when he awoke his scrotum was "the size of a soccer ball."

Trauma is a possible cause for Warren’s condition, said Kassahun, who has examined him, "but known cases are very rare."

Warren said after the initial swelling he immediately went to University Medical Center for help, where he was given a two-week regimen of antibiotics for what was thought to be an infection. He said he was in the hospital for four days and doctors there told him to go see his primary physician.

Then working on commission finding appropriate sites for ATM machines in the Las Vegas Valley, Warren said he went to doctors off and on for months, including a lymphedema specialist, without finding help. "I kind of gave up," he said.

But the swelling became so large that he could no longer work. He went on disability. And in early 2010 he again entered UMC, hoping that doctors could find a way to take him out of his misery.

Kim Voss, an associate administrator at the hospital, said that during an eight-week period a team of doctors, including urologists, surgeons, internists and infectious disease specialists, wrote up 20 different documentations of what they found.

In references to Warren’s condition, medical practitioners interchangeably use scrotal elephantiasis, scrotal lymphedema or scrotal edema, a condition characterized by an excess of watery fluid collecting in tissues of the body, to describe his condition. Doctors don’t know if his condition could grow even more pronounced.

UMC’s medical team did find that Warren had a hernia and fixed that.

Though the infectious disease generally tied to the elephantiasis was not found, Voss said multiple courses of antibiotics and anti-viral medications were given to Warren in hopes that they would take down the massive swelling. When they didn’t, she said doctors told him about a surgery that could be performed through Medicaid.

Urologist Kassahun informed Warren that a team of urologists and plastic surgeons would be needed to cut away the excess tissue and to perform the reconstructive surgery that would include skin grafts. Every attempt would be made to save and reconstruct Warren’s penis and testicles, but it was possible that they would have to be completely excised.

"I told him that if there was major bleeding we might not be able to save them," Kassahun said.

That news shook Warren.

"Basically, he was telling me there was a good chance that I would be castrated and have to go to the bathroom through a tube for the rest of my life," he said. "I really would like to have a relationship with a woman. I should be in the prime of my life right now."

Even though scrotal lymphedema is exceedingly rare outside certain tropical regions of the world, Kassahun told Warren that it was possible that the UCLA Medical Center in California may have surgeons who could better deal with his situation.

At UCLA, where Warren recently paid nearly $600 for an evaluation, he said doctors seemed more confident about saving his penis and testicles. They also told him that it would cost nearly seven figures for the procedure. Even if Nevada’s Medicaid program would allow him to go out-of-state for surgery, Warren said UCLA doctors informed him that they doubted that would work.

"They said Nevada Medicaid doesn’t pay enough so I would be a cash patient," he said.

Still, even if he comes up with the cash, Warren admits that there is no guarantee the surgery would work.

"But I do feel I would have a better chance," Warren said.

In a situation as extraordinary as Warren’s, Kassahun said, there can never be a guarantee of success.

"That would be irresponsible," he said.

Warren has lived in Las Vegas for more than 15 years, initially coming here from the New York City area, where he worked in security and as a messenger. He had hoped to work on the production crew of the movie, "Casino." Though that didn’t work out, he stayed.

A tad more than 6 feet tall, he was more than 300 pounds before the scrotal lymphedema. With the 100 pounds from that condition added on — he said he weighed his scrotum on a scale — he is now about 450 pounds. Even sitting, his breathing is labored, sounding much like someone hurriedly climbing the stairs.

He suffers from high blood pressure and asthma, often using an inhaler. A home health care nurse visits him twice a week.

Just how difficult routine matters can be for Warren became apparent the other day when he went to buy money orders and pay bills at the downtown post office. It took him three hours to do what a person in reasonable physical shape could accomplish in less than half that time.

As he got dressed for the trip, an acquaintance helped him with the struggle to pull the compression garment over his scrotum. That took at least 15 minutes.

Then he stepped through the arms of a sweatshirt and wrestled with the zipper on the hood that would cover his edema. That took another 15 minutes. Sweating, he used a safety pin and belt to hold the hoodie up and then put a regular shirt on.

"I was looking in my closet one day and figured out that a hoodie would be something I could wear out and cover my problem," said the bespectacled Warren, who wears a New York Fire Department cap on his head.

He walked with the uneasy steps of a toddler, though he was wearing size 15 sneakers — "my feet have swelled, too." He left his apartment complex for the bus stop across the street, the milk crate and pillow used to hold his scrotum in his hands.

He worried that he might fall as he went up and down curbs and as he got on and off buses. He had to transfer once each way.

"I fell when I went up a curb when I went for my trip to the Stern show," he said. "It’s real hard to get up. You wouldn’t believe how hard it was for me to use one of those little restrooms on the plane. It was almost impossible. I was glad I was on the red-eye so people didn’t see what a hard time I was having getting in and out."

Once on the buses, Warren placed his hoodie-covered scrotum on the milk crate and pillow. Other passengers looked at him briefly but didn’t seem to know what to make of it. They went back to their conversations.

"I really don’t think people know what I have," Warren said after he finished his trip. "It’s not something people have seen before, I’m sure of that. I doubt if they can even imagine it."